Rhoda Akilapa is a consultant in clinical genetics at Guy’s and St Thomas’ NHS Foundation Trust. She specialises in rare diseases, with particular expertise in skeletal dysplasias and connective tissue disorders.

Roly Megaw is an academic ophthalmologist with a clinical and research interest in the inherited retinal dystrophies (IRDs), a group of untreatable, monogenic conditions that are the leading cause of visual loss in children and working adults. 

Audrey Hughes is the Patient Involvement and Engagement Office for the Polycystic Kidney Disease (PKD) Charity UK and helps ensure that patients and the public are represented in research.

Kerry has lived experience as her son is diagnosed with AS which is an ultra-rare and complex condition. She is a patient representative on the England Rare Diseases Framework Delivery Group and is co-applicant on various NIHR funded research studies.

I am an operations manager with experience in team management, contract management, publications development and editing, bid writing, service and strategy development and events.